A new vision of parenting

Taking your child to the park is normally a fun and relaxing time. But if you’re a parent who is visually impaired or blind, venturing out into your neighbourhood with your child in tow for the first time can be nerve-racking.

“It took me a long time to take my son to the park—he was a fast runner,” recalls Shelley Adams, a Halifax mom with vision loss and a coordinator with the Canadian National Institute for the Blind (CNIB). “He was just over three years old when I took him to the park alone. I was very anxious about it.”

One of the big challenges facing parents with vision loss is getting comfortable parenting in public. “That encompasses travelling around safely and independently with your child,” says Adams. “I like being out there and showing the general public we’re doing the same things as everyone else. It’s about confidence and being comfortable with who you are.”

Inspired by her own parenting experiences, Adams started a parenting-with-vision-loss program last September with the CNIB. The first peer-support group of its kind in Canada, it connects parents over the phone for weekly sessions. They chat about everyday challenges—from potty training to administering medicine—and people’s perceptions of parenting with blindness. “It’s a forum to share ideas and learn from one another,” Adams says. “It’s good to know that other people have been there and this is how they did it.” (Surf to cnib.ca/ns for more on the program).

Dartmouth dad Jeff Overmars participated in the program last fall. He and his wife Sarah are parents to a three-year-old girl and are expecting their second child in May. He’s a passionate advocate for blind and visually impaired people. After graduating university, he lived in the Caribbean and in Toronto working with blind and visually impaired people to help them integrate into their communities. “Vision loss may be something that has held them down but it hasn’t diminished their passion or enthusiasm,” he says. He now works as a marketing advisor with the provincial government while Sarah teaches at Citadel High.

Jeff has choroideremia, a genetic eye disease that affects the choroid layer at the back of the eye, causing the retina to degrade over time. Jeff has been slowly losing his eyesight since he was diagnosed at 16. “I have a small island of vision in my right eye that I can still see quite well out of but I have no peripheral vision, and my left eye is entirely blind,” he says. “It’s like having Vaseline rubbed over the lens of a camera.”

With no treatment available for his condition*, Jeff is expecting his vision to worsen. “I’m 33 today and this is about the time when doctors expect that I will become completely blind,” he says. “I’ve been doing well up until this point but when the last chunk of vision goes, it will go overnight.”

In this interview, Jeff describes what it’s like parenting with vision loss. While it does pose some challenges, he explains how it also inspires him to relish every moment of being a dad. “Being able to see my child for the first time and being able to watch her be born and grow was pretty joyful and fascinating,” he says. “I strive to be present all of the time and to not be distracted when I’m with my family. I have to work at this, but I think a lot of people do.”
*Jeff is fundraising to support choroideremia clinical trials set to take place at the University of Alberta. Visit Choroideremia.ca/bluenose for more details.

How do you get around?
I’ll use a cane if I’m going to an environment that I’m not familiar with to avoid people getting irritated by me bumping into them…There will come a time very soon that I will have to begin using a cane for my safety and for the safety of others—so if they see the cane coming and I don’t see them coming, they can step out of my way. As it is right now, I’m very confident in my mobility.

What was it like when you first became a dad?
I was pretty grateful. I didn’t anticipate having sight when I had children, so being able to see my child for the first time and being able to watch her be born and grow was pretty joyful and fascinating. I think I was more overwhelmed by the fact that there was a child coming than I was thinking about how my visual impairment was going to influence my parenting. I do everything else much as a sighted person would do so I didn’t think I’d be parenting in a different way. She was very immobile for the first little while—as infants are—we’d put her down and she wouldn’t much move, so I always knew where she was. But when she began to toddle around, her location in the house became less predictable…there were instances of me knocking her over…you quickly learn that children aren’t as breakable as you might think they are, which is pretty reassuring. Our daughter is a tough little girl—if she ever takes up contact sports when she grows up, I’ll take responsibility for that [laughs]

Does your daughter understand yet that you’re different from other dads?
It’s early at this point…but it’s becoming normal for her to be more descriptive when she describes something to me. If she says, “it’s over there, daddy” I’ll ask her to describe where it is or to take me to it. She’s close[r] to understanding what blindness is. Close friends of our family delivered twins prematurely four years ago…Both boys are blind. My daughter sees these two little boys who are close to her age on a regular basis. She understands that they don’t see…As they become more engaged in play together, the questions of why can’t they see may come…I think there’s benefit in understanding how children perceive blindness. They don’t think about it—they just innately understand it. Whereas blindness in the larger community is an issue for some people, certainly when it comes to employment.

Do you think your experience will be different with your second child?
We’ll come at it with more confidence in terms of our understanding of the needs of a newborn…we’ve gone through the process of raising a child and we’re both more prepared for it. And we have a helpful three-year-old in the house who is very excited about having a new brother or sister.

What are the everyday challenges you encounter as a parent?
Going on walks and being out in public, I have to spend a great deal of attention to my surroundings and where I’m going. Before, I was only responsible for my own safety but now there’s much more valuable cargo on board when I’m travelling with my daughter…There’s no daydreaming or mindless meandering. We’re very fortunate that we live in the downtown core. There are about five playgrounds within walking distance of our house and sidewalks lead to each of them, so we don’t have to worry about awkward terrain…we know where we’re going. I’ve had the opportunity to introduce my daughter to public transit at a very early age and we can go to a place on our own. She loves the bus and is growing up understanding the importance of transit, which is me doing my part to instill value to that…One of the things that frustrate me is children’s literature…it’s beautifully illustrated but the contrast can sometimes be horrible. A beautiful scene can be painted in such a way that the text colour on the background makes it impossible for me to read. But with an iPad, I can read a lot of books with my daughter, which makes it a little easier.

What kind of reaction do you get from other parents?
Few of them actually know that I have a visual impairment. I don’t carry a cane to daycare or to the playground, so they don’t identify me as visually impaired. They might just think I’m not interested in making conversation or I didn’t notice them saying hello when I’m more focused on getting around safely…I think there is more work being done to help people who are blind or visually impaired integrate into society and find work.

What is your parenting philosophy?
I strive to be present all of the time and to not be distracted when I’m with my family. If I’m not paying attention to my daughter when I’m playing with her, then I’m not going to pick up on those moments or in that instance where she discovers something new, like what it is that is my blindness. It’s something important that we all as parents have to work at.

What advice do you have for other parents with vision loss?
Don’t underestimate your abilities and use opportunities to educate other people. If you are at a playground carrying a cane and people ask you questions, answer them. Don’t consider it a criticism—if someone is curious about something, help to educate them. It’s our responsibility to advocate and we can’t expect organizations like the CNIB to do it all on our behalf…We’re all doing the same thing in different ways. We all stand to learn from one another. I’ve learned a lot of what not to do from parents who are sighted simply because I see the way their children react to it. It’s a learning experience all the way around.